Update #16 – Can’t Have the Positive Without the Negative

Doctors have told me since the very beginning of my diagnosis that my disease is incurable and terminal. Yet, almost 5 years on my current medication has encouraged my, perhaps fanciful, belief that somehow, just maybe, I can escape what doctors tell me is my certain fate. As month after month has passed without major incident, my confidence has grown. But, lately that confidence has been tested a bit.

First, my CEA numbers rose. Then they dipped, but my scans showed a new tiny spot on my right lung. And then the CEA jumped up again … along with my anxiety. We don’t know for sure what this means. The new spot is too small to tell yet, and the CEA is an imprecise measurement tool. My doctor wants me to rescan in 8 weeks rather than my typical 12.

It seems to me that there are generally 3 possible paths after the next scan:

Best Case Scenario – I get really, really lucky, and the spot stays the same, shrinks or disappears, implying that it’s not a growing cancer spot, but some other sort of inflammation, and the CEA dips back down.

Moderate Scenario – Spot grows a little, appears to be cancer, but we are able to treat it with targeted radiation (perhaps even biopsy it first to get information that may help guide future treatment decisions) and I am able to continue on my current medication for the foreseeable future.

Worst Case Scenario – Spot grows considerably, or multiplies, necessitating a shift in treatment. Treatment options are limited, there are only two semi-promising medications. One is FDA approved for a different type of cancer, so I’d have to get my insurance to approve it off-label, and even then it only works maybe 30% of the time (odds I don’t love). The other is in early stage clinical trials with less understood odds and can be very difficult to secure access. If neither of those options pan out, things can spiral downward with distressing alacrity.

As I contemplate these options, my emotions have vacillated. When I first got the test results, the anxiety was so acute I actually felt the blood rush to the surface of my skin, tingling all over. I’ve calmed down since then. I’m surprising myself with how ok I’m feeling right now. It could be just a strong case of the denials (it’s not just a river in Egypt, y’know – badumbum). But actually (and counter-intuitively), I credit my current ok-ness to allowing myself to acknowledge the fear and ponder all possible scenarios, even the worst case one.

A lot of cancer patients endeavor to stay strictly positive, avoiding any thought of worst case scenarios. Our society puts patients who appear to succeed at this on a pedestal as a paragon of patient perfection. For me, this approach works as well at covering up my scary feelings as my “miracle slimming pants” do at covering up the size of my ass (which is to say, sadly, not very well at all).

Psychologists know that suppressing emotions not only doesn’t work, it actually amplifies them. It turns out that the best way to ameliorate tough feelings is to face them. Harvard Med School psychologist Dr. Susan David counsels that acceptance of our emotions, including the negative ones, is critical to developing resilience and achieving true happiness, not just the shiny “model patient on a pedestal” variety (thanks to Mare for the pointer to David’s fantastic TED talk). My friend Shari, who is a therapist, often says “You’ve got to name it to tame it.” With practice, I’ve learned that diving deep into the suck and and specifically identifying the monster lurking in the shadows (e.g. “I am feeling fearful that I will run out of treatment options, experience pain and die sooner that I would like”) is key. It’s scary initially, but then the relief is palpable, and it’s much better than tip-toeing around the shadows and settling for a false positivity I can’t trust.

So, that’s the news from Lake Wobegon Planet Lisa. It’s not ideal, but it could be worse. I hope my post doesn’t send anyone into a panic. I wrote this for me as much as I did to keep everyone updated. I’m facing my fears and making room for lots of hope, and I’m doing ok. I don’t need anything right now. All I really ask is that we avoid easy platitudes and instead favor the vulnerability necessary for true positivity. If you want to do more, I’d be super grateful for some focused thoughts/prayers/energy on realizing Scenario 1, with a back-up of Scenario 2 as I traverse these next couple months before my August scan. Thank you so much. Xo

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